Development of long-term conditions questionnaire

Over 15 million people in England live with at least one long-term condition (Department of Health, 2005). This number is expected to rise, as is the number of people with multiple conditions. Long-term conditions (LTCs) typically cannot be cured but need to be managed over long periods of time, and may involve care from both health and social services.

It is a key government priority to assess and improve outcomes in LTCs (Department of Health, 2013a,b). Traditional clinical outcome indicators such as mortality or improvements in physical health may not be informative enough to monitor outcomes in LTCs. With LTCs, where care is likely to be more complex, there is a need to move beyond more traditional domains of health outcomes and to shift to patient-centred outcomes. One useful way to measure patient-centred outcomes is to look at what is important to patients directly.

With the movement in health and social care services towards integrated care, a new questionnaire applicable across LTCs (physical and mental health) is needed.

We are conducting an exciting new research study as a collaboration between the PSSRU and the University of Oxford that involves validating the newly-developed 20-item self-reported Long-Term Conditions Questionnaire (LTCQ). We aim to explore whether the LTCQ is appropriate for use among people with different long-term conditions, including those who receive social services. The objectives of the study include identifying the factor structure of the LTCQ as an outcome measure for LTCs, potentially reduce the number of items in the LTCQ, assess whether the LTCQ is valid for use in people with LTCs, and to assess whether the LTCQ is a reliable measure. Participants are being recruited through both primary care and social care services.

There are two surveys used for recruitment for this study: the primary care survey and the social care survey. The primary care survey involves recruiting people with a range of long-term conditions through primary care practices. This part of the study will be conducted by the University of Oxford.

The social care survey involves recruiting people with long-term conditions who receive social services. This part of the study will be conducted by the PSSRU team at the University of Kent. For this part of the study, local authorities will be invited to recruit individuals with long-term conditions who receive social services. We are now at the stage of recruiting local authorities to take part in this study.

If you are interested in becoming involved or would like to receive further information with regards to the social care survey, send me (Laurie) an email and I’ll be in touch!

Contact: Laurie on 01227 816166 or l.batchelder@kent.ac.uk

Disclaimer: The views expressed on this website are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

References

DEPARTMENT OF HEALTH 2005. Supporting people with long term conditions: An NHS and social care model to support local innovation and intergration. In: HEALTH, D. O. (ed.). London.

DEPARTMENT OF HEALTH 2013a. The Adult Social Care Framework 2014/15. In: HEALTH, D. O. (ed.). London.

DEPARTMENT OF HEALTH 2013b. The NHS Outcomes Framework 2014/15. In: HEALTH, D. O. (ed.). London.

Patient-reported outcome measures (PROMs) research conference | 18 Nov 2014 | The King’s Fund

Patient Reported Outcome Measures (PROMs) have developed since their initial introduction into routine use in April 2009 for assessing the outcome and quality of care in the NHS in England for four elective procedures, to being included as part of the NHS Outcomes framework since April 2013 with plans to expand the use of PROMs to additional surgical procedures, to long-term conditions, to mental health care and to dementia care.

This conference will focus on how we can get more value from the large amount of data that is collected. Aimed at researchers, information scientists, clinicians, those involved in quality assessment (national clinical audits), and policy-makers, the conference will:

explore the expansion of PROMs to additional surgical procedures, to long-term conditions, to mental health care and to dementia care
bring together researchers already involved in PROMs and others interested in contributing to hear about current work and to consider the future research agenda
discuss opportunities for greater international collaboration.
This conference is the third annual research conference held on this subject – jointly organised by The King’s Fund and London School of Hygiene and Tropical Medicine – and it will draw together researchers already involved and others interested in contributing to hear about current work and to consider the future research agenda.

In addition to learning about recent and current research in England, similar developments in the USA and Spain will be discussed.

For more information, and to register, please visit The King’s Fund.

2014 QORU Seminar

QORU seminar: Using information on quality and outcomes to improve decision-making about care

24 March 2014, 13.30 – 15.30

Venue: London School of Economics and Political Science, Tower 1, G.01

Health and social care policy emphasises ‘outcomes’. Patient-reported outcome measures (PROMS) and measures of social care-related quality of life are collected. But can we use these outcome indicators to best effect? What other information do we need to interpret them?

This Department of Health-funded policy Research Unit in Quality and Outcomes of person-centred care (QORU) seminar brings together interested parties to discuss the use of ‘outcome’ data in practice, and what is needed to ensure that policy-makers and practitioners have access to useful information in the future.

Presentations

  • Online reviews and care, Lisa Trigg, PSSRU at LSE
  • Use of quality information in decisions about accommodation and support for people with learning disability or autism, Julie Beadle-Brown and Agnes Turnpenny, Tizard, University of Kent
  • Is outcomes-based management and policy-making a reality for local government? Juliette Malley, Clara Heath and Kamilla Razik, PSSRU at Kent
  • How can we make best use of quality and outcomes information? Facilitated discussion / Q&A, Angela Coulter, University of Oxford

The seminar is free to attend but places are limited. Please register by emailing Amanda Burns: a.l.burns@kent.ac.uk or phoning 01227 823862

PDF download of the event flyer.

Personal outcome measures and postal surveys of social care

Joanna Apps, Tanya Crowther and Julien Forder

The drive for greater personalisation of social care has led not only to interest in gauging performance by measuring the outcomes of individuals receiving support but also in exploring personalised ways to measure those outcomes. Work has been underway since 2009 among a group of local authorities in England, led by Oxford City Council, to incorporate personal outcome measures (POs) into social care assessments, care package planning and review. Personal outcomes are the goals people want to achieve through the social care services and support they receive. Personal outcomes are often categorised as ‘soft’ outcomes and placed in contrast to ‘hard’, process-based measures of service performance and throughput. They are also often distinguished from outcomes based on policy or clinical outcomes.

The aim of the study was to assess the feasibility of including a PO measure in a postal survey: the Adult Social Care Survey (ASCS).

This work was commissioned as part of QORU’s responsive mode.

The report can be downloaded on the publications page, or directly.

QORU Seminar April 2012

Download the Flyer

2nd April 2012
1.25pm – 4:45pm

Wolfson Theatre LG.01
Lincoln’s Inn Fields
London School of Economics

Free Event
Places are limited so register early to avoid disappointment

To book your place contact
Esther Sidley
pssru@lse.ac.uk
020 7955 6529

How can we make the best use of information outcomes?

Health and social care policy currently puts considerable emphasis on ‘outcomes’. The new outcomes frameworks for health and social care have at their core patient reported outcome measures (PROMS) and measures of social care-related quality of life. But to what extent do these measures really reflect ‘outcomes’ for people with long-term conditions? How can we make best use of these outcome indicators? What other information do we need to interpret them?

The Department of Health funded policy Research Unit in Quality and Outcomes of person-centred care (QORU) is holding a seminar on 2 April 2012 at LSE to bring together interested parties to discuss how we can improve the quality of services through use of ‘outcome’ data that is increasingly becoming available, but has yet to be fully integrated into health and social care management processes.

Choice and decision making around home based health and social care services

Sara Ryan

Report Background

Download the Report

This report is about how people with long-term conditions, and their carers, make decisions around the use of home-based health and social care services. Based on a secondary analysis of 231 in-depth interviews with people who either had Parkinson’s disease or autism, or who had survived heart failure or stroke, or were carers for people with multiple sclerosis or dementia, we found that most people were not offered a choice of service type or provider. This was due to a combination of lack of available, appropriate support and a lack of ‘good’ information. We conclude that, in practice, the principle of choice is illusory.

QORU Seminar January 2013

Download the Flyer

11th January 2013
2pm – 4:05pm

NAB LG.01
Lincoln’s Inn Fields
London School of Economics

Free Event
Places are limited so register early to avoid disappointment

To book your place contact
Esther Sidley
pssru@lse.ac.uk
020 7955 6529

Understanding outcomes for people with long term conditions

Health and social care policy currently puts considerable emphasis on ‘outcomes’. The new outcomes frameworks for health and social care have at their core patient reported outcome measures (PROMS) and measures of social care-related quality of life. But to what extent do these measures really reflect ‘outcomes’ for people with long-term conditions? How can we make best use of these outcome indicators?What other information do we need to interpret them?

The Department of Health funded policy Research Unit in Quality and Outcomes of person-centred care (QORU) is holding a seminar on 11th January 2013 at LSE to bring together interested parties to discuss the use of ‘outcome’ data in practice and what is needed to ensure that policy makers and practitioners have access to useful information in the future.